Let’s Help Sohana Beat EB!

source: sohanaresearchfund.org
source: sohanaresearchfund.org

You all know by now that Damian Lewis is a proud patron of Sohana Research Fund (SRF). We have already seen him fund-raising on BGC Charity Day, taking the EB Tongue Twister Challenge as well as talking to Dr. John McGrath, one of the leading experts in the field of Epidermolysis Bullosa (EB) research, to help raise awareness and find a cure for this very painful skin condition.

Damian also recently gave his time for the Fund’s Silver Butterfly Dinner Live Auction on May 14, 2015:

source: sohanaresearchfund.org
source: sohanaresearchfund.org

I don’t know the final bid to have that privilege… What I know is that I am so happy I was not in that room for the live auction — well, I could have bid all my money and had bankruptcy! 😀

Ok. I admit I first found out about Sohana Research Fund thanks to a “call to arms” clip that Damian did last year.

Well… I had heard about “Butterfly Children” before, but I honestly did not have much idea about how painful a condition EB was. With a quick Damian Lewis fan reflex, I immediately donated and also shared the clip on several Damian Lewis FB pages. I, then, gradually started to find out about Sohana’s story and this became much bigger than being a big Damian Lewis fan — I became a BIG Sohana fan!

I am utterly delighted to tell you that I have finally been able to meet my young hero Sohana, her mom, another hero, Sharmila, and Sohana’s lovely sisters Jacinda,  Akhaila and Zuleikha on my recent trip to London!

source: sohanaresearchfund.org
source: Sohana Research Fund

Meeting Sohana and getting to know her a little bit better was very special; the two of us finding out about the love we share for another hero, Harry Potter, was extra special! But it was also a huge eye opener. It’s incredible to see how mature Sohana is at 12 and the way she talks about her condition casually is incredibly moving.

Here is her typical day in her own words from the Silver Butterfly Dinner Booklet.


I am old enough to know that life is not fair, but I still cannot come to terms with the fact that such awful conditions happen to children. EB is a serious condition. There is good research being done, and it is the only thing that can bring the magic to have a world without EB. That’s why we need more research and need it NOW. The clock is ticking and we should ACT immediately to raise more awareness and funds to help find a cure for EB.

Sohana Research Fund is run by Sohana’s mother Sharmila. Since the family covers the cost of events, fund-raising as well as the administration services, 100% of donations individuals make to the fund directly go into the research projects. The fund has already funded a clinical trial in adults, and now they are actively raising money for a clinical trial in children which they hope to start next year. They have been able to raise some serious money at the Silver Butterfly Dinner; however, it is still not enough, and every dollar counts! Note that you can contribute in other ways as well: You can take the EB tongue twister challenge like Damian did and you can spread the word about the fund!

Since I am a big believer of example being better than precept: I took the EB tongue twister challenge and donated, too! In case you missed my EB Tongue Twister earlier — I did it on New Year’s Eve — here it is!

And… I would love to invite all Damian Lewis fans once again to PLAY! Don’t be a stranger, come join the campaign! It’s easy, it’s fun! Just film your EB Tongue Twister, tweet it to @SohanaResearchF and they will take very good care of it! It doesn’t matter if you are from a non-English speaking country, either; you can do your Tongue Twister in any language of your choice!  In case you wimp out and want to send a donation: text OUCH10 £10 to 70070 if you are in the UK. Or, you can always securely donate anytime and anywhere on justgiving.com/sohanaresearchfund.

Please follow Sohana Research Fund at @SohanaResearchF on Twitter and visit and like their Facebook Page. Please get informed, get involved, and help find a cure for Epidermolysis Bullosa “Hard to say, Hell to Live with!” Thank you!

Author: Damianista

Academic, Traveler, Blogger, Runner, Theatre Lover, Wine Snob, Part-time New Yorker, and Walking Damian Lewis Encyclopedia :D Procrastinated about a fan's diary on Damian Lewis for a while and the rest is history!

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